Suzanne Klug and daughter Tamara

“It’s been a nightmare,” said Suzanne Klug, of Des Plaines, whose daughter, Tamara, 21, with cerebral palsy and severe developmental delays, has been forced to find a new primary care doctor, surgeon, orthopedic surgeon, neurosurgeon and neurologist after being enrolled in the new Medicaid program. (Heather Charles/Chicago Tribune)

It can take years for people with cerebral palsy, autism, schizophrenia or Down syndrome to find trusted physicians to oversee their health. Now, families and advocates say, those medical relationships are being threatened as Illinois rolls out a new program of HMO-style care for people with serious disabilities.

Many doctors and hospitals are refusing to join the new Medicaid program, which the state hopes will better coordinate care and lower costs for some of its neediest recipients. The providers' rationale: They dislike the bureaucratic hassles and cost-cutting measures associated with managed care.

The ranks of those who have said no, for the moment, include prominent medical centers and physician practices with a long track record of serving the disabled, among them Northwestern Memorial Hospital, Rush University Medical Center, the University of Chicago Medical Center, Children's Memorial Hospital and Loyola University Health System.

Because of the situation, hundreds if not thousands of vulnerable, chronically ill individuals are being forced to find new doctors, some of whom appear ill-equipped to handle their needs, according to consumer advocates and families.

Under traditional Medicaid, people are free to see whichever doctors they like, so long as these providers participate in the government program. By contrast, under managed care, people are required to seek treatment from restricted networks of hospitals and doctors.

"It's been a nightmare," said Suzanne Klug, of Des Plaines, whose daughter, Tamara, 21, with cerebral palsy and severe developmental delays, has been forced to find a new primary care doctor, surgeon, orthopedic surgeon, neurosurgeon and neurologist after being enrolled in the new Medicaid program.

Altogether, almost 40,000 adults with disabilities and Medicaid coverage living in suburban Cook, DuPage, Kane, Will, Kankakee and Lake counties are being affected by the state's push to enroll them in two private, HMO-style plans — Aetna Better Health and IlliniCare Health Plan — that have promised to better coordinate medical care for these needy, vulnerable individuals.

Chicagoans with disabilities on Medicaid are excluded for now but will find themselves in similar arrangements over the next several years if the pilot program expands as expected.

It's the first time Illinois has required managed care for people on Medicaid — a strategy being adopted by many states — and the change is difficult, report consumer advocates who arranged a meeting with state officials Thursday to discuss their concerns.

"To be forced into something like this — it's so disruptive," Klug said.

The first managed care doctor who saw Tamara "had a look of panic on her face when I rolled her wheelchair into the waiting room, and spent less than five minutes with her before mentioning a waiting room full of patients," Klug said.

Despite repeated reminders, a second doctor failed for more than two weeks to order refills for two essential medicines, for pain and muscle spasms.

Klug is still searching for a neurosurgeon who can check the shunts that drain fluid from Tamara's brain; the closest enrolled in her Aetna plan at the moment is listed as more than 30 miles away.

"It's been endless hassles, endless phone calls, endless anxiety," she said.

People with disabilities began learning about the new managed care arrangements this spring; mandatory enrollment is expected to be completed for all but a few individuals in nursing homes by October.

Most worrisome, advocates say, is the absence of experienced, trusted medical providers from Aetna's and IlliniCare's networks.

"The biggest concern we're hearing is that the physicians people have used in the past are not in (their) networks," said John Jansa, program director of the Progress Center for Independent Living in Forest Park. Some physicians aren't equipped to meet the plans' requirements; others are unwilling to do so, said providers who asked not to be identified.

Of Chicago's leading academic medical centers — institutions that tend to treat the most demanding, complex patients — only the University of Illinois at Chicago Medical Center has agreed to join the new Medicaid pilot program, though several providers indicated they were keeping open the option of signing up later. Only one of Will County's four general hospitals has come on board.

Explaining Rush Medical Center's decision to steer clear of the pilot program, Brent Estes, a vice president, said managed care plans tend to impose burdensome administrative requirements and pursue ways to restrict payments to hospitals. In a statement, Loyola University Health System confirmed that it wasn't joining the Medicaid pilot program at this time, in part because "our expenses for Medicaid exceed our reimbursement."